Hi, I have a predicament that I haven't seen discussed yet. My father just passed about 6 months ago. My mother is 86 and is doing fairly well but is beginning to decline very noticeably. I am her single 63 year old daughter and I've been diagnosed with CFS/ME. Due to my physical challenges, I have been forced to quit my job, give up my little condo and move in with my folks 5 years prior to my dad passing. Most of my life I have gotten by on a meager salary due to the fact that I never had enough energy to work more than 20 hours a week. Therefore, when my health forced me to quit I took an early retirement at 62 just to have some type of income. Because of my history of low working hours, my social security check only comes to $700 a month. My disability claim is pending but looks ominous because CFS doesn't show up on blood tests so I have no solid proof other than a diagnoses by default. I have no assets and I'm on Medicaid. My question is, what happens financially when Mom becomes unable to care for herself and we start to spend down the small amount of her savings she has to either find someone capable of care taking her or place her in a home? I know Medicaid will take over after we spend down to about $2,000 but my questions is more about whether or not they will allow me to remain in the home? $700 a month isn't enough for me to live in this house but it's the only place I can be right now. My daughter lives in Iowa but I want to be near my mom and be there as much as my health permits. Mom gets $1500 a month from social security and we've been pooling our checks to pay the bills. If they take all of Mom's social security check each month I won't be able to pay all of the bills. Is there some kind of provisions the government makes to disabled (but not on disability) adult children who have lived with their parents so as to provide shelter for them when their surviving parent ends up in a home?
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Generally, it looks like you will need to start planning for living on your own. Find low income housing for yourself... Plan how far your finances will go to care for yourself... and apply for Medicaid if it will not be enough. You may also need to move ahead into putting your plans for survival into effect before you place your mom into a residential facility.
If your mom is just now beginning to decline, the two year period Medicaid will look at (where your care helped her to stay in the home when she could be considered ready for institutionalized care) may just now be starting. It would be important to take her to the doctor to document the decline and show that the care you are giving is helping to keep her in the home. Document all medical events and her decline - take her to doctor to ensure records will be available when it is time for her to move to a facility. A note: always ask for a copy of each doctor visit summary so you don't have to ask for it several years down the road (and perhaps pay to get a lot of paperwork at one time). It is also possible that the care you provided to dad could be counted if you kept him out of a nursing home.
Not sure how much money she has to spend down to be eligible for a Medicaid bed, but managing it to keep her at home for the two year period, but it might be a good time to ask an elder attorney now. It is possible that you could get mom to set up what is sometimes called a Lady Bird deed to transfer house to you at time of mom's death - which prevents home from being involved in a probate and an asset that Medicaid would consider as hers when she passes. This would need to be done while she is still mentally sound.
All of her income is going to be used toward the expense of her Medicaid bed with Medicaid paying the balance. You won't get to keep any of it like a spouse would. They do have a provision to allow a caretaker child to stay in the home, but they don't let child keep any money. If your only income is $700 and not enough to maintain the home, what is your plan? Sell it and move closer to a child? Something else to discuss with attorney is the income you would make off the house (if you sell it) because you are on Medicaid. More than likely, you will be ineligible for Medicaid until you spend the house money down. An attorney can can direct you.
Have you looked into getting home care for your mother? Medicare and Medicaid might pay for that. That way, you both can live in the home.
Here is a link for the AAA for Illinois.
https://www.agingcare.com/local/illinois-department-on-aging-springfield-area-agency-on-aging-il
Perhaps a roommate would help?
Check with your Area Agency on Aging to see what benefits might be available for you and your mom.
https://www.payingforseniorcare.com/medicaid/caregiver-child-exemption